Continuity and quality of community care for children with cancer: A qualitative study on the experiences and needs of parents and adolescents

Abstract

Purpose: A major challenge in pediatric cancer care is to get the right care in the right place at the right time. To improve the continuity and quality of care for children with cancer and their families, a care network is being developed in the Netherlands, for which the perspectives of parents and adolescents are crucial. Therefore, the aim of this study was to get insight in the experiences and needs of parents and adolescents regarding quality and continuity of care in the community. Methods: This is a qualitative study; data collection was conducted through focus group sessions and interviews. Parents and adolescents treated for cancer were invited to participate. An inductive and descriptive thematic analysis approach was used to analyse the data and generate themes. Results: Twenty-one parents participated in online focus group sessions and 8 adolescents participated in an online individual interview. Four themes emerged related to the Experience with care; Feeling insecure, Feeling disempowered, Feeling frustrated, and Feeling overwhelmed. Additionally, four themes related to the Care Needs were found: the need for Trust, Headspace, Sense of ownership, and “Listening to my story”. Conclusion: Parents and adolescents emphasized the importance of continuity and quality of community care by healthcare professionals. We will use the rich in-depth information of experiences and care needs of parents and adolescents to inform the design of a national care network with the goal to ensure continuity and quality of care close to home for children with cancer and their families.